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Objectives Extending palliative care services to those with long-term neurological conditions is a current aim of UK health policy. Lack of holistic guidelines for palliative and end-of-life care, and differing models of service provision, has resulted in heterogeneity in care access and quality. There is a need for evidence-based standards of care to audit Parkinson’s services and drive improvements. Methods A two-stage Delphi process was used to achieve consensus on statements that define quality standards in palliative care for patients with Parkinson’s disease (PD). An expert panel was selected to comprise healthcare professionals, patients and carers based in the UK; this panel evaluated the statements via a Delphi survey. Quantitative and qualitative analysis of the results informed modifications between the Delphi rounds. Results A final set of 16 statements was produced, reflecting aspirational standards of palliative care in PD. These statements, split into four domains (‘Structures and processes of care’, ‘Preparing for the end of life’, ‘ Care in the last weeks of life’ and ‘Care in the last days of life’) underline the importance of joint working between generalist and specialist services, individualised care and early and regular advance care planning. Conclusions The Delphi process has established a set of standards which can be integrated within and guide services, helping to improve the quality and equality of care. Further work remains to establish the effectiveness of different models of service provision, including the implementation of keyworkers and telemedicine.

Background: The increase in Heart Failure incidence globally poses a major public health challenge. Living with advanced heart failure places a considerable burden on patients and their informal caregivers. Improved education and support to patients and their informal caregivers and input of palliative care services could support both in living with heart failure. Aims and objectives: To evaluate an 8-week programme of education and support delivered in a day hospice for people diagnosed with heart failure and their informal caregivers. Methods: Semi-structured focus groups were conducted. Patients and informal caregivers focus groups were conducted separately at the conclusion of the 8 week programme. They were recorded, transcribed verbatim and inductive thematic analyses were performed. Results: A total of 10 focus groups were conducted. Most patient participants were male (92%), aged > 70 years, and most informal caregiver participants were female (93%) and aged > 50 years. Analysis of the data found the patient participants' themes were the Importance of Knowledge; Support and Communication; Gateway to Resources and ‘Living well’ with heart failure. The informal caregiver focus groups found similar themes; Becoming Stronger; Altered Outcome for the Future and Connection through knowledge. Conclusions: Patients evaluated the 8-week programme positively, finding the increase in knowledge of heart failure and resources available increased their confidence and thoughts about their future. The support gained from other people with heart failure was invaluable. Informal caregivers through increased understanding of heart failure and access to peer support, reported feeling calmer, more confident and less fearful of what lay ahead.

Background Involving adults lacking capacity (ALC) in research on end of life care (EoLC) or serious illness is important, but often omitted. We aimed to develop evidence-based guidance on how best to include individuals with impaired capacity nearing the end of life in research, by identifying the challenges and solutions for processes of consent across the capacity spectrum. Methods Methods Of Researching End of Life Care_Capacity (MORECare_C) furthers the MORECare statement on research evaluating EoLC. We used simultaneous methods of systematic review and transparent expert consultation (TEC). The systematic review involved four electronic databases searches. The eligibility criteria identified studies involving adults with serious illness and impaired capacity, and methods for recruitment in research, implementing the research methods, and exploring public attitudes. The TEC involved stakeholder consultation to discuss and generate recommendations, and a Delphi survey and an expert ‘think-tank’ to explore consensus. We narratively synthesised the literature mapping processes of consent with recruitment outcomes, solutions, and challenges. We explored recommendation consensus using descriptive statistics. Synthesis of all the findings informed the guidance statement. Results Of the 5539 articles identified, 91 met eligibility. The studies encompassed people with dementia (27%) and in palliative care (18%). Seventy-five percent used observational designs. Studies on research methods (37 studies) focused on processes of proxy decision-making, advance consent, and deferred consent. Studies implementing research methods (30 studies) demonstrated the role of family members as both proxy decision-makers and supporting decision-making for the person with impaired capacity. The TEC involved 43 participants who generated 29 recommendations, with consensus that indicated. Key areas were the timeliness of the consent process and maximising an individual’s decisional capacity. The think-tank (n = 19) refined equivocal recommendations including supporting proxy decision-makers, training practitioners, and incorporating legislative frameworks. Conclusions The MORECare_C statement details 20 solutions to recruit ALC nearing the EoL in research. The statement provides much needed guidance to enrol individuals with serious illness in research. Key is involving family members early and designing study procedures to accommodate variable and changeable levels of capacity. The statement demonstrates the ethical imperative and processes of recruiting adults across the capacity spectrum in varying populations and settings.

As the demand for palliative care increases, more information is needed on how efficient different types of palliative care models are for providing care to dying patients and their caregivers. Evidence on the economic value of treatments and interventions is key to informing resource allocation and ultimately improving the quality and efficiency of healthcare delivery. We assessed the available evidence on the economic value of palliative and end-of-life care interventions across various settings. Reviews published between 2000 and 2019 were included. We included reviews that focused on cost-effectiveness, intervention costs and/or healthcare resource use. Two reviewers extracted data independently and in duplicate from the included studies. Data on the key characteristics of the studies were extracted, including the aim of the study, design, population, type of intervention and comparator, (cost-) effectiveness resource use, main findings and conclusions. A total of 43 reviews were included in the analysis. Overall, most evidence on cost-effectiveness relates to home-based interventions and suggests that they offer substantial savings to the health system, including a decrease in total healthcare costs, resource use and improvement in patient and caregivers' outcomes. The evidence of interventions delivered across other settings was generally inconsistent. Some palliative care models may contribute to dual improvement in quality of care via lower rates of aggressive medicalization in the last phase of life accompanied by a reduction in costs. Hospital-based palliative care interventions may improve patient outcomes, healthcare utilization and costs. There is a need for greater consistency in reporting outcome measures, the informal costs of caring, and costs associated with hospice.

During the Covid-19 pandemic, a strategy to minimise face to face (FtF) visits and limit viral spread is essential. Video consultations offer clinical assessment despite restricted movement of people. We undertook a rapid literature review to identify the highest currently available level of evidence to inform this major change in clinical practice. We present a narrative synthesis of the one international and one national guideline, and two systematic reviews - all published within the last 18 months. The global evidence appears to support video consultations as an effective, accessible, acceptable and cost-effective method of service delivery. Organisations must ensure software is simple, effective, reliable and safe, with the highest level of security for confidentiality. Although video consultations cannot fully replace FtF, they can radically reduce the need for FtF and the risk of Covid-19 spread in our communities whilst maintaining high standards of care. For patient safety it will be critical to follow the World Health Organisation guidance regarding: a Standard Operating Procedure; clinical protocols for when video consultations can (and cannot) be used; policies to ensure equity of access in disadvantaged populations; adequate staff training and administrative support to coordinate appointments.

Despite a large body of research suggesting that the built environment influences individual travel behaviour, uncertainty remains about the true nature, size, and strength of any causal relationships between the built environment and travel behaviour. Residential self-selection, the phenomenon whereby individuals or households select a residential area based on their transport attitudes, is a frequently proposed alternative explanation for the reported associations. To resolve the issue of residential self-selection, longitudinal studies are often recommended. In this paper, we argue that intervention study designs are insufficient to fully resolve the problem and that intervention studies on the built environment and travel behaviour may still be biased by residential self-selection. The aim of this paper is to extend existing conceptualisations of the relationship between the built environment, travel behaviour, and attitudes and to provide suggestions for how a causal relationship between the built environment and travel behaviour may be ascertained with more accurate estimates of effect sizes. We discuss the complexities of determining causal effects in intervention studies with participants who relocate, and the biases that may occur. We illustrate the complexities by presenting extended conceptualisations. Based on these conceptualisations, we provide considerations for future research. We suggest repeating analyses with and without individuals who relocated during the study, and with and without statistical controls for residential relocation. Additional quantitative and qualitative analyses will be necessary to obtain more accurate effect size estimates and a better understanding of the causal relationships.

Death and dying are inevitable. High quality and accessible palliative and end of life care can help people who are facing progressive life-threatening and life-limiting illness, and those dear to them, by focusing on their quality of life and addressing the problems associated with their situation. This paper draws attention to the scale of the challenge, some of the key areas we could address and the shifts in culture, mindset and leadership approach that are needed.

This book chapter is from The transport system and transport policy : an introduction: Transport impacts on people and businesses in many different ways, and presents some of the key problems that decision-makers need to address. This comprehensive textbook introduces the transport system in a holistic and multidisciplinary way, bringing together the myriad components of transport. This textbook is written for an international readership of undergraduate and postgraduate students in transport and related subjects, as well as for professionals and policy decision-makers across both public and private sectors.